Desmoid fibromatosis found in breast of 19 year old female

I had to read about this kind of tumor https://www.mayoclinic.org/diseases-conditions/desmoid-tumors/diagnosis-treatment/drc-20446388

So it is non-cancerous in the sense that it does not spread to other parts of the body, but can grown where it is located and affect organs. Surgery, radiation and chemo may be used. It says that if it has grown to involve organs, some tissue may be left during surgery and those other treatments might help.

I don't know if anyone can chime in with actual experience. You might also try breastcancer.org, to get more opinions.

Thank you for the speedy response. As of right now, the Huntsman center wants to do a full mastectomy on the affected breast. I was hoping for some non-surgical procedures and was hoping someone would have some firsthand experience.

I am sending you a private message.

I don't like to say this publicly but I think breastcancer.org might be more helpful. This kind of tumor is rare and not sure how many can come back with personal experience on the Mayo site. Maybe. But more chance on breastcancer.org.

A mastectomy is hard for a young person. I have had two and am "flat: but was 63 and could care less.

If doctors want to do a mastectomy there must be a reason. Is the tumor threatening to grow near or around internal organs? If so it seems much harder to deal with. As a parent I would probably support the idea of mastectomy if the doctors can explain why it is needed.

There may still be radiation or chemo according to that site. With breast cancer they sometimes shrink tumors before surgery using chemo, so you could ask about that.

I preferred having both taken off. We have a right to symmetry. For a person with potential for partners or breastfeeding, I would think keeping one is a good idea.

Is this a matter of survival? Can you ask that? It that context, loss of a breast is just something to accept even if acceptance is a hard process.

breatcancer.org is all about breast cancer. If nothing else, there are moderators that could point you in the right direction. I had a dbl mastectomy the end of2022. It was right for me. I agree to ask questions of the medical team on why this is being recommended.
Keep us posted.

A friend had chemotherapy in the arteries that feed the tumor. A procedure that was successful and left her without scarring.
You might send results to a medical oncologist and a radiation oncologist. Surgeons often recommend surgery. And surgery might be the best chance at preventing recurrence.
Radiation has been used successfully with desmoid fibromatosis, proton radiation and cryotherapy.
It is easiest to send copies of all reports and then to schedule video conferences. Memorial Sloan Kettering has the reputation but, more importantly, experience with this type of tumor. They will do genetic testing to determine the risk of recurrence.
Bless your efforts with success.

Appreciate this advice so much, thank you! Just got results from the MRI looks and like the left breast has some “extremely dense fibroglandular tissue.” We are hoping that doesn’t lead to a double mastectomy.

How large is the tumor?
My understanding is that desmoid fibromatosis doesn't spread from one breast to another.

@beckyolson33, I'm connecting you with @tanyakem, who also had a mammary desmoid-type fibromatosis. You can read more about their experience in their post here: https://connect.mayoclinic.org/comment/1009992/

Becky, you must be so worried about your daughter. How is she handling all of this? How are you doing? How did the appointment go with the surgeon?

Thank you for sending the link, I look forward to reading it! We have not heard from Huntsman since we had the MRI on the 7th, despite all our efforts to contact and leave message for the surgeon. Super frustrating! My daughter is very strong, the stress after the MRI did get her down for a couple of days. She has wonderful friends and a ton of family support, which is key. Thank you for thinking of her and again, sharing the link!